October 27, 2013

These days, I am reading any and everything I can about Down Syndrome in hopes of learning all I need to know to help our son to reach God's potential for his life. There are stacks of books beside my bed, in the living room and in the family library covering topics on diagnosis, treatment, estate planning, physical therapy, fine motor skills, gross motor skills, communication, education and on and on goes the list. For every manual and educational book there is at least one book of stories, memoirs or some other motivational book focusing on Down Syndrome. When Gillian Marchenko's new book, Sun Shine Down: A Memoir came across my email, I quickly clicked on the description. I just knew from the title it had to be about Down Syndrome. I was right.

The day before we left for vacation Gillian sent me an eBook. I don't usually do deep reading on vacation. It's too hard for my brain to shut off. But I downloaded Sun Shine Down anyway because I was so looking forward to it. The file I received was a mess and very difficult to read on the Kindle and the iPad. But I pushed forward. Because I wanted to read it so badly.

Gillian's language was very easy to read and instantly had me caught up. However, the way she hopped around in time at the beginning of the book was very confusing. I found myself backing up to figure out what time period she was talking about. Reading about life in the Ukraine was fascinating to me and I am glad to have had a first hand look into that world.

I really wanted to love this book. I have read a dozen similar books in the last few months but not one of them has been filled with the hope and encouragement I think mom's with Down Syndrome need to hear. I wanted to love this book and come back here and tell the world how, at long last, this is the one. I wanted to go to my personal blog and tell my readers to go out and buy this book right away. I wanted to send a copy to each of the five special families who are the prayer support team for our boy. But I simply did not love this book.

It was just more of the same pity party I have read in books and on blogs from Christians and the world at large concerning their reactions when receiving a diagnosis of Down Syndrome. As the mom to a 6 month old son with Down Syndrome I want to read about hope and joy. But every corner I turn is filled with mothers whining and complaining about the lot they got stuck with when their baby was born with Down Syndrome. And I can't understand that position. We talk and we talk about how the world should love and accept our children. But how can we ask the world to do that when, as their mothers, we go in to hiding and take up drinking in order to cope with our child's diagnosis? I don't understand it.

That's not to say that there aren't tears. Nor to say there aren't concerns. I've got more than my share. But you get up. You love your child. You do what needs to be done. And in doing so, you show the world that a child with special needs is still as wonderfully and as fearfully made as any other child. You show the world, through your complete unconditional love and acceptance that they, too, can love every being made by the Father fully and completely.

Gillian and I evidently come from different schools of thought. On her blog she suggests that it is okay to not celebrate Down syndrome. But I disagree. Our Savior has told us to find joy in all things and I think that means Down Syndrome as well. In believing that my Lord is in control of all, I also believe that means Down Syndrome. In my faith that His perfect will is best, I must also believe that means Down Syndrome. What right do we have to rejoice at the gift of the Lord in our "typically developing" children if we won't equally rejoice and celebrate at the gift of our children with Down Syndrome? Every good and every perfect gift is from above and that means our Father does not give us anything that isn't perfect, including Down Syndrome.

In the end, Gillian accepted her daughter and made peace with the diagnosis. And that's how most of the stories end. And for that I am glad. But my heart still breaks for the wasted time and needless heartache suffered all around because of this belief that it is okay to not accept your child for who God made them to be.

And the fact is the world doesn't need anymore stories like that. We are surrounded by them. What we need are stories that show parents there is hope and encouragement. Perhaps if there were more of those, the image of Down Syndrome would change. And perhaps if the world could see that Down Syndrome isn't the end of life, just the beginning of a new and daring life, then more mothers could rejoice at the birth of their special needs children and more mothers would be able to accept their little ones. And maybe, just maybe, it would catch on.

And who knows what could happen? Perhaps, mothers would stop choosing to abort their babies with Down Syndrome. Perhaps, doctors would stop encouraging them to do so.

I am sorry, Gillian. I feel for the pain you suffered. But I am sorry for Polly, too. Who didn't have the unconditional love of her mother for over a year of her life. And I am even more sorry for the 95% of children who are diagnosed with Down Syndrome this year who will be put to death because there are too many people who share your initial reaction.

It is time for a FIRST Wild Card Tour book review! If you wish to join the FIRST blog alliance, just click the button. We are a group of reviewers who tour Christian books. A Wild Card post includes a brief bio of the author and a full chapter from each book toured. The reason it is called a FIRST Wild Card Tour is that you never know if the book will be fiction, non~fiction, for young, or for old...or for somewhere in between! Enjoy your free peek into the book!

Gillian Marchenko lives in Chicago with her husband Sergei and four daughters. Her writing has appeared in Literary Mama, MomSense Magazine, Chicago Parent, Thriving Family, Today’s Christian Woman, and Gifted for Leadership. A speaker, and active on Facebook, Twitter, and her website, Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.

What if you dreamed of having a beautiful child, and in your mind you saw the life you'd share with that child. First steps, little league (or ballet). Maybe the child would play piano or make you proud on the Honor Roll. There'd be eventual graduations, college, even marriage and grandchildren. You might dream it out that far. Or not. Every parent has hopes. No parents wish for pain—their own, or a child's.

Then you had a premature delivery in a foreign country. And the words swirling around you said a different kind of "what if." What if something was wrong? The dream was at risk—or so it seemed. Would you be ready for that? Could you make peace? Or would it take you down?

These are the questions author Gillian Marchenko faced as she woke up after an emergency C-section in Ukraine. Only her newborn child could answer them, in time. But first she had to find a way to hear more than the words "Down syndrome."

I woke up just before seven the morning of April 5, 2006, in a surgical recovery room in a hospital in Kiev, Ukraine. Sluggish, I scanned the room, unable to take in my surroundings. A thin white sheet covered my body. I shivered. A metal table housed a tiny television in the corner of the room. The bare walls were a pale shade of blue gray.

Did Sergei leave? Lifting my hand, I placed it on my breastbone and slid it toward my navel. My mid-section felt numb. Pushing down, it was as if I tapped another person’s toneless stomach. White gauze held my empty abdomen tight. I had been eight months pregnant.

Five hours earlier, I stood naked in a warm shower, my blond hair tucked into a flimsy paper cap. A delivery nurse crouched in front of my middle. “Krasata,” she hummed in Russian, smiling, telling me I was beautiful, while methodically shaving me.

I couldn’t see the nurse’s face over the bulge of my stomach. Her brown hair bobbed in and out of sight as she talked. I imagined her gold tooth sparkling as her mouth moved. In Russian, “krasata” means beautiful as in, “you are a beauty.” My skin was now translucent, stretched to its limit. I looked like ET’s pregnant cousin, wide-eyed from fear, hair thinned.

“Tebye nada peesat?” the nurse asked as she cleaned off the razor. I nodded – yes, I have to pee, and then I squatted, awkward, as my bladder emptied. I hadn’t peed in front of someone since kindergarten, when I used to make my best friend, Carol Peruski, go to the bathroom with me. The yellow stream swirled around and around the shower floor before sliding down the drain. I wanted to be back home in Michigan, tucked away in an American hospital. I wanted to understand everything being said to me.

*

I had hugged my daughters goodbye that morning, expecting to return in a few hours. Elaina, five and a half years old, had a habit of patting my tummy hello and goodbye. Zoya, eighteen months younger, stood on her tiptoes and aligned her lips with my belly button for a kiss. They hurried our goodbye. They had big plans to make a fort underneath the dining room table with their beloved Ukrainian nanny, Lena.

Our “stalinka”—the historical apartment in Kiev where we’d been living for the last three years, since we’d moved from Chicago to Sergei’s native Ukraine to help start and grow churches—showed few signs of a baby coming. A pack of diapers and some second-hand clothes were piled in the corner. A stroller stood in the hallway by the front door next to a line of shoes. We needed more supplies: ointment and shampoo and bottles. Infant clothes needed laundering. There wasn’t a place for the baby to sleep.

After saying goodbye to the kids, I’d inhaled in an attempt to flatten my protruding belly, needing at least two buttons of my coat to fasten. Giving up, I grabbed a scarf hanging on a hook near the front door and looped it around my neck to keep the Ukrainian winter air at bay. There were three weeks left until my due date. A simple pregnancy check-up coaxed me out the door with a promise of some much-needed time with my husband.

We'd sat in the car a few minutes, waiting for the engine to warm and for the frost to break up on the windshield. I could see my breath. “Let’s swing by that American restaurant on the river after your appointment,” Sergei suggested.

“You’re on!” I said. “And I know what I am going to order: Eggs Benedict. I am going to eat it all, too. It’s not like I can get any bigger than this, right?”

“You look beautiful,” Sergei said.

At the appointment, I lay on a long brown bed and watched the obstetrician measure my stomach with the kind of measuring tape my mother used to make our clothes when we were kids. The doctor measured once.

“Hmm.”

“Shto shto?” I asked in Russian. What? What do you see? Is something wrong?

Upon hearing my question, Sergei, who sat on the other side of the room, stood up and walked over to us.

“Shto takoye?” Is there a problem? Sergei asked.

“What? Oh no. Not a problem. I want to measure Gillian’s belly one more time.” The doctor positioned her right hand on the examination table next to my side and extended the tape across my abdomen. She hunched to ensure the right start and stop point on the tape and then held it out in front of her, stretching it wide.

Sergei stood to the right of the doctor. He took hold of my hand and looked at me with that same steady gaze I'd noticed when we first met. When Sergei looked at a person, his eyes were unwavering, showing his confidence. At first that intimidated me but in our years together, it had become a great comfort. He heard what the doctor said and knew her words would worry me. He was with me and present, just as he had been for the last seven years.

The baby had measured small at checkups earlier in my pregnancy but the doctor had never been concerned about it. At one point the baby measured three weeks behind her due date in size and development. At that time, the doctor reassured me that I had nothing to worry about. “She is growing which is the main thing,” she'd said, winking. The doctor, jolly and round, acted like a female version of Kris Cringle. “There’s no problem. Either we miscalculated the due date or you have a petite little girl in there," she'd explained as she turned her attention to Elaina and Zoya who happened to be with us at that appointment. “Now, girls, are you excited about the baby? And how do you like living in Ukraine?”

“Sergei, please tell her we are concerned.” I'd wanted reassurance. To calm me, the doctor had ordered several ultrasounds and non-stress tests. Each time, the tests had shown the baby staying still. “Ona speet.” She’s sleeping, was all she’d say.

Today she said, “Here’s what we are going to do, Gillian. We’re going to admit you to the hospital overnight. I suspect the baby needs extra vitamins and nutrients. That should get her back on track."

“Should we worry? Is it something else?” I glared at Sergei the way wives do when they want their husbands to telepathically understand they should jump in with questions and concerns of their own.

“No! Don’t worry!” the jolly doctor smiled at us.

Instead of heading off to breakfast as planned, we went directly to the hospital. By noon I sat gowned in a room on the fourth floor. A nurse hooked a monitor to my belly to follow the baby’s heartbeats. I watched the squiggly green lines on the black screen dip low as my stomach tightened with each Braxton Hick's contraction. Something is wrong. I know it.

We were assigned a new doctor, tall and tan with a wide smile. His fuzzy, brown hair was gone in the back of his head. He wore glasses. He looked the part of the new Ukrainian, the guy who achieved success somehow during economic instability. The first two buttons of his crisp white shirt were open revealing a heavy chain that shimmered around his neck. Two huge, gold rings covered his knuckles. He was excited to have an American patient because he was learning English.

He introduced himself to Sergei first, in Russian, and shook hands with him. Then he peeked at me. “Hello, there. I see you having a baby? That’s great. I…um…ugh… I am happy to be of assisting of you today here in Ukraine. I am fond of America. And, um…, I am tried to work on my English.”

The new doctor continued to sputter and pause as he talked to me, searching for the right words to say in English. I would answer him in Russian, to let him know I could, and then wait for him to find his next English word.

I had studied Russian with a private tutor three times a week, two to three hours a session, for three and a half years. The day I met Tatiana Nikolayevna, my Russian teacher, I was nervous. She was a mountain of a woman with bleached blond hair. Her high cheekbones and pointed nose gave her a diplomatic air. She walked with a limp, suggesting she'd suffered a hip dislocation at some point in her life. One moment she’d give me an icy glare, then seconds later an approving smile would spread across her face.

For years I'd trudged along, immersing myself in basic conversation, memorization and grammar study. I cried at some point in every session. Tatiana was firm, but kind. In the beginning, I likened Russian to a blurry photograph. I knew something was there, but I could not make out the picture. It was humiliating and exhausting to try to speak a foreign language. Then one day the picture started to come into focus. I heard actual words, sentences, and eventually full conversations. I became an avid eavesdropper. My time deaf and mute in Ukraine came to an end. I had survived basic Russian language acquisition.

*

Outwardly I kept my cool at the hospital. But inside, I yelled at everyone who walked through the door. Check me and go away! Let me lie here and worry in peace. I’m not in the mood to teach English as a second language.

After meeting the new doctor and helping me settle into the room, Sergei left the hospital to go home and check on Elaina and Zoya, and arrange the rest of the day's schedule. About an hour after he left, I realized I would need a few things to stay overnight. I called him on the cell but got voicemail. “Hi, it’s me. Hope the kids are okay. Listen, since I’m going to be here for the night, can you grab a few things for me while you’re home? I need a change of clothes, my contact case, and maybe a book to read. Thanks. Love you.” After I hung up, I lay back on the hospital bed and focused on the clock on the opposite wall. There was nothing to do but wait. My hands were shaking.

Sergei got back to the hospital around four o’clock. Occasionally, the English-learning doctor came in, checked the monitor, and listened to my stomach with a stethoscope. Sergei asked questions. “How’s the baby doing? Do we know if the glucose and extra vitamins are helping yet?” We discovered that one phrase the doctor knew well in both English and Russian was “wait and see.” He would not outright answer our questions. “Wait and see,” he’d say, already turning to leave.

By nine o’clock, our American colleagues started to call. Julie, the mother hen of our ex-pat group, called first. Her husband James was our team leader, and they had been living in Ukraine for over ten years.

“I hope you don’t mind, but I called Lydia to tell her about you and the baby.” Lydia was another American working with us. Before moving to Ukraine, she was a postnatal nurse at Children’s Memorial Hospital in Chicago.

“That’s fine, Julie,” I muttered, my frustration breaking through. I wasn’t mad at Julie. I was mad that I was stuck in the hospital. I was mad that we were told over and over again to wait and see.

Julie continued, “And we are coming to the hospital. Once our sitter gets here, James and I will pick up Lydia and we’ll be on our way.”

As soon as I hung up, the phone rang again. Lydia’s voice, strong but soft, filled my ear with questions and greetings.

The threat of tears tightened my throat and I could only manage a whisper, “The baby hasn’t grown at all since the last visit to the doctor two weeks ago. I have an IV in right now, and I’m receiving glucose and other vitamins. The doctor says this will help bulk the baby up and get her back on track.” Sergei sat in the corner of the hospital room, pretending to be interested in a newspaper he'd picked up in the hospital lobby.

“Whenever I feel a contraction, the green squiggly line on the monitor drops low,” I said. I expected a response from Lydia. Instead, silence. For a second, I wondered if the phone lost its connection.

“Gillian, I will be there in a half hour. The next time your doctor comes in the room, you need to demand an emergency c-section. I don’t want to scare you, but in the States your baby would have already been delivered. She is not doing well. She’s in trouble. Listen to me; you have to talk to your doctor.” I tightened my grip on the phone. Sergei stood up, came over and sat down on my bed. “What’s wrong?” he mouthed. I shook my head and turned to the window.

“Okay, Lydia. We’ll tell him.” I hung up the phone and started to cry. Sergei leaned in and took me in his arms.

“Lydia said it sounds like the baby is in extreme distress. She said we need to demand a c-section.”

Always pragmatic, Sergei wondered out loud, “How can we know she is right? She isn’t even here. The doctor said the baby needs some extra help.” I moved out of Sergei’s arms so I could look him in the eye.
“Lydia said if we were in the States, the baby would have already been delivered.” I felt a sob rise and my body began shaking. “Sergei, please find the doctor.”

My husband agreed and went to get the doctor. I was alone. I knew it. I’d known for weeks that something was wrong. I should have spoken up more. Oh God, please let the baby live. I want to go home. I did not trust the doctors in this hospital. I wanted my mother. A few minutes later, Sergei came back to the room with the English-learning doctor who had his usual broad smile.

“Umm, your husband said that you are worried that the baby be born?”

“Yes. I have an American friend who is a nurse. I talked to her on the phone and she said that with the baby’s heart beat dropping so low, I would have already had a caesarean section if we were in the States. I’m worried. We need to talk about delivering the baby.”

I stared at this man who was dressed in white pants and a white, button-down shirt with a lazy stethoscope draped around his neck. He was a doctor. I wasn't sure of the schooling process in Ukraine, but in America he would have completed close to a decade of education in order to qualify for this job. Shouldn’t he know? Didn’t he know?

“The baby is stabilizing with the IV. It hasn’t been enough time. I think we should wait and see. She needs more time.” The doctor glanced from my face and Sergei’s to see if his words registered. Sergei spouted back in Russian.

They talked a few more minutes and then the doctor smiled at both of us and left. The clock next to my hospital bed read eleven o’clock at night. The baby had been receiving fluids since noon. I studied the monitor next to my head. The baby’s heart rate still dropped once in a while.

“He doesn’t know what he’s doing!” I snapped at Sergei.

“I know this is hard, but he’s a doctor. He’s your doctor. We should listen to him. And I’m not saying this lightly. That’s my baby too in there. I’m worried. But Lydia isn’t here and the doctor is, and I think we should listen to him.”

Julie, James and Lydia arrived within the hour. They were upbeat, commenting on the nice hospital room, cracking jokes and squinting at me through the room’s bright lights. All three tried to act like it was the most natural thing in the world to hang out in a Ukrainian hospital room at midnight. I loved them for it.

A nurse located the English-learning doctor. When he came into the room, Lydia stepped forward and introduced herself. She went on to tell him what she told me on the phone. As she spoke, she kept taking steps closer to him. Soon, she stood right in front of his face. The doctor no longer smiled. “Doctor, this baby needs a cesarean section right away!” James and Julie hung back on the other side of the room. Sergei got up from the bed and stood next to Lydia.

“We are going to wait and see if the IV helps,” the doctor declared. Lydia persisted, eyeing my husband for language assistance and nodding incessantly as her words poured in a mixture of English and Russian. Her stern face and tone of voice pleaded with the doctor to take action.

I could tell by the projection of her voice that Lydia meant business. Here was one of my people, not only a colleague and a friend, but an American medical professional weighing in on the fate of my child.

After hearing more from Lydia, Sergei took her side. “We need to see if anything else is going on with the baby. My wife is frightened. We don’t want to wait and see anymore.” Sergei squared his deep blue eyes on the doctor.

“All right. I guess we can take a closer look at the baby through an ultrasound.”

“Nyezashto,” the doctor replied. Don’t mention it. His expression was blank when he left the room.

*

Twenty minutes later I concentrated on Sergei’s face, as a coiled cord smeared icy liquid over my midsection. Doctors and nurses huddled around the ultrasound screen, whispering to one another in Russian. The technician tapped on my stretched skin, seeking the baby's beating heart beneath it. As my abdomen tightened again, the small huddle of Ukrainian professionals all gasped at the monitor.

“Sergei, ask them what they see.”

Sergei cleared his throat. “Izveneete pozshalusta. Shto takoye?” Excuse me, please. What is wrong? Our doctor turned around from the group and faced us. Oh no, here we go. Sergei took my hand in his.

“The baby’s heart beat goes too low with the contractions. We need to do a caesarean section right away.”

*

Back in my room, shaved and ready for surgery, I perched on the end of the high hospital bed and studied the imperfections on the tan walls. Sergei had gone downstairs to sign papers to allow the surgery. James, Julie and Lydia had gone to search for the nearest waiting room. All of a sudden I felt the need to take everything in. I wanted to remember every detail. A well-polished wooden desk with a matching chair stood against the wall in front of me. Cream-colored curtains with deep pleats framed the window. My stocking feet dangled above the alabaster tile floor. They seemed disconnected from my body.

I thought about Elaina and Zoya sleeping in their Estonian-made bunk beds back at the apartment. Sergei and I searched all over Kiev before purchasing the pale, hardwood beds. Thick cotton blankets were probably tucked up under the girls’ chins. I imagined their Babushka, Sergei’s mother, asleep in the next room, ready to provide a drink of water or a trip to the toilet. I wished I had kissed them goodnight.

I heard footsteps in the hall. The doctor stuck his head through the doorway. “Gotova?” No time for English now.

4 comments
:

If there is anything sweet Henry has taught me it is that he most certainly is a GIFT and a BLESSING! Your family has been such an incredible example and it is my ferverant prayer that if God ever chooses to bless Brandon and I with a child with special needs that we immediately respond with love and graciousness. Just wish I could have some Addison cuddle time right now!

I think you put the wrong link in here? I went to Huffington and found what I believe was the article you were pointing to.

Yes, I did enjoy the article very much. Because this is the point I am trying to make. Why do parents fall in to despair at the diagnosis of DS? It is because of the image the world paints. When our Addison was born everyone we encountered tried to steal our joy by telling us how very sorry they were. I am so grateful that the accuser was not allowed that in road into our hearts. Now that Polly is 7 (I think that's correct) I know you agree. The idea you, and all mothers receiving a diagnosis of DS, are given is so untrue. Untrue enough that you decided to adopt Evangeline. Yet, mother after mother chooses abortion because of that false image. I don't intend to judge anyone. We are all human and we all fall short, me more than anyone else. However, somewhere, somehow, someone, must start to show the world our babies with DS are not something to mourn but someone to rejoice over. Because as long as we say it is okay to mourn, we will continue to propagate the lies of the world.

I wish you well, as I know we both have the same goal in mind. And I pray Sunshine Down will be a vehicle to reach countless hearts for those yet to be born with DS. I also pray that with the platform you have gained in the public eye, you will speak out for babies and mothers by telling them this is a time to embrace the wonderful gift from God and the joy he has in store for them and to begin doing so by celebrating the birth of their little ones and the greatness of DS in their lives.

Kathleen Wachter

Most of all I am a Christian, wife and home school mom to nine. Here you will find snippets from my life, recipes, tips for child rearing, home schooling advice and moments from our journey with down syndrome.